Saturday, February 25, 2012

This is the author's note to Pillow: A sibling story, which was written by Sophia Isako Wong. Sophia has a 40-year-old brother with Down syndrome. She is an associate professor of philosophy at Long Island University in Brooklyn, New York. She writes about political and educational inclusion for people with cognitive disabilities and justice within family relationships.

I wrote this story to illustrate how typical siblings may feel when they provide “respite care” for their parents. Research shows that parents often believe that their children are emotionally mature enough to recognize their own developmental needs and to speak up for themselves. One parent said, “I know if it’s too much for her she’ll tell me.”

Let me tell you a secret: we sibs don’t tell our parents how we truly feel. Our motto is “Never mind me; you have enough to deal with. I’ll figure it out by myself.” If our behaviour seems untroubled and serene, that’s because we are experts at hiding our worries, resentment, envy and nightmares.

In families untouched by disabilities, sisters and brothers fight, argue, sulk and express the whole spectrum of feelings toward each other. In our families, we never get that opportunity. With our sibs, it is never a fair fight. Even if we have a just cause, the disabled child usually gets the lion’s share of our parents’ attention and sympathy.

We’ve learned through experience that we are rewarded with positive attention from parents for being the easy child, and sometimes reproached for making more trouble for you. So we often help you without complaining.

We watch you every day. We see that parents have far too much to do, resources are lacking, and there aren’t enough hours in the day.

When we notice how exhausted you are, we fear that you won’t be able to take care of us adequately, or you might have to quit your jobs, and where would we be then? So we volunteer to give you a break, thinking this will help the whole family survive. “Parentification” is what happens when children perform the role of parent at the expense of their own developmentally appropriate needs and pursuits. When children take on responsibilities performed more appropriately by an adult, they feel torn between looking after the vulnerable sibling and taking care of their own needs.

If a child or teenager (mistakenly) perceives that his needs are less important than the needs of others in the family, he may volunteer to sacrifice time and energy he would otherwise devote to school, friendships and typical childhood activities.

Research shows increased risk of psychological and social problems in some siblings who are burdened by excessive caregiving roles and who, in effect, become ‘little parents.’

Here’s the good news: the whole family benefits when parents take breaks from the exhausting work of caring for a child with disabilities. Parents need to take care of their own health by asking support staff, neighbours, friends and family members to help out. Doing so gives them precious time to rest and recover from the stresses of parenting a child with disabilities.

Even if your typical child is eager to babysit, and is supremely confident she can handle it, please make sure an adult is supervising her at all times. That way, she doesn’t have to function as an adult before she is ready. By helping but not being in charge, typical children can continue to focus on what they need to be healthy and safe.

Trust me, we siblings of kids with disabilities feel intensely guilty whenever we play with other kids, master skills that the disabled sib will never learn, or pass for normal in a crowd. We’re acutely aware that we are very lucky to be non-disabled, and that we might have been born in the disabled sib’s shoes.

Some of us are forever trying to make it up by being on our best behaviour, concealing our negative feelings and accepting more than our fair share of household chores. Many of us see ourselves as Super Sibs: born to babysit. You may even believe that we are more high-functioning and more emotionally mature than other kids our age. Don’t be fooled: we are kids with the same concerns and complex emotions as other young people.

So if your child volunteers to babysit before she has become a competent adult mature enough to have her own children, I hope you’ll think of Pillow and Sister and say: “No, honey, go ahead and play. We’ll hire a babysitter, use respite, or ask other adults to help us when we need a break.”

23
comments:

I'd be interested in seeing this "Research shows increased risk of psychological and social problems in some siblings who are burdened by excessive caregiving roles and who, in effect, become ‘little parents.’". The use of the word 'excessive' is highly subjective. Personally I do not believe that a sibling should ever be the respite care, unless by respite you mean a one hour nap where everyone is still in the same room.From the story of the pillow it seems that the drive came from the sibling and certainly wasn't forced request by the parents. But I get what you are saying, the difficult circumstances of the physically and mentally compromised child creating feelings in sibling where they are taking on extra responsibility. Extra responsibility is there though and each child will work with what they are capable of doing. It's not an easy situation but certainly not one which can be summed up by 'research' since each special needs child is so different, the dynamic of each family so unique and the tools that each sibling has not generic.My daughter makes sure she does her own thing and tells me when she believes she's doing too much. That's her job and it's mine (i Believe) to tell her when I need more because it wasn't until I was at the end of my rope that I started making demands. My other son, older and in the army is so different, with an entirely different skillset from his sister, does his own thing as well but because of his love for his little brother is always ready to do whatever it takes. So is it possible to find a balance? That depends. Some situations are so hard that the best balance is always something in motion that you are chasing after.The situation is much more complex when the severity of the disability is catastrophic and there is no 'babysitter' to begin with.

I would have preferred it if you had couched this from YOUR perspective. This was YOUR experience, YOUR family, YOUR thoughts, YOUR feelings. YOUR sibling has his/her own unique needs which are NOT the same as all others with a disability.

Huge sweeping generalizations like this make me deeply uncomfortable.

As a person with a disability, I know for sure that my brother was not put into the situation that you were. I also know that my best friend who has a brother with Down syndrome was not - in fact, she has often said that she WISHES her parents had involved her in his care (she is now 55; he is 50).

And so - I ask you: please share your story, share your voice, but keep it in the realm of your own experience.

Thank you for posting this. You have really helped me connect to my childhood experiences to my current feelings. My brother has ADHD. Growing up, I was the parent every weekday from 2pm-5:30pm. I remember many of the same feelings you describe. I still slip up and say "our son" occasionally when speaking of my brother to my parents!! I now am the mother of a child with a chromosome disorder and significant special needs. I realize that my hesitation to grow my family stems greatly from what my childhood was like. Although, I see from the comments on this post that I would likely swing the opposite way continuing to be the stoic one and keeping any sibling perhaps too sheltered. Great post!

I realize this is the beginning of a difficult conversation between adults with disabilities and their family members. This blog highlights the experiences of parents, and siblings who serve as surrogate parents deserve a voice too. Numerous empirical studies indicate that being asked to do caregiving for disabled and otherwise vulnerable family members does affect children under the age of 18. Anyone is welcome to review the scholarly literature on the link between underage caregiving and parentification in Canada, the US, Australia and the UK. I have not reviewed the research in languages other than English.

Before submitting this piece to BLOOM, I sent drafts of this piece to various list serves so that parents of children with disabilities and siblings could let me know if I was accurately reflecting what they have experienced in their families. I received dozens of replies urging me to publish this research and to start this important dialogue.

No parent intends to ask his/her children to do too much. However, there are children who are at home alone with their highly vulnerable disabled siblings as we speak, and many of us adult sibs are just now discovering the long term effects.

If anyone is aware of research providing evidence to refute what I have presented, please send it to me for my review as my project is still ongoing.

My intention in writing the short story and the accompanying note was to raise awareness that families of people with disabilities need more support, more access to respite care and to professional caregivers, and more visiblity in society at large. I hope we can all agree on this point at least.

The research mentioned refers to youth (often teens) who were involved in daily caregiving of a sib -- feeding, bathing, dressing, reading, household chores etc. Oftentimes the degree of caregiving provided interfered with the youth completing school work or doing other age-appropriate activities.

The research doesn't relate to typical teens who babysit their sib occasionally.

In one of the studies of this excessive caregiving, called Burdened Children (there are a number of US studies), the study concludes by saying "There is evidence of increased psychosocial risk for some siblings of children with chronic illness or disability."

Sophia's author's note initially said that research showed that babysitting is harmful to sibs, and through discussion we altered the line to refer to the specific research about excessive daily caregiving (not babysitting).

I do think Sophia's stories are an important wake-up call to many of us to be vigilant about protecting our other children's childhoods. That said, as my oldest daughter became a teen and began babysitting in the neighbourhood, it was a natural step that she would also babysit all 3 of our other kids, including my son with disabilities. I don't think this was damaging to her, but again, I take Sophia's piece as a reminder to be aware that my daughter may have feelings that she doesn't voice.

I know many adult siblings who forgo marriage/family to continue to care for their adult siblings with disabilities, I am one myself. I remember most of my parents arguments were surrounding my sister's care. When parents argue children become frightened/insecure. Jeanne Safer's book The Normal One explores the feelings/conflicts of adult siblings.

It's a topic that needs airing and I am in agreement for the most part except to say that I don't agree with the following. "In families untouched by disabilities, sisters and brothers fight, argue, sulk and express the whole spectrum of feelings toward each other". My sister had a very late onset disablity which occured in her 20's, prior to that we were most emphatically NOT allowed to fight, argue, sulk and express the whole spectrum of feelings and my suspicion is that this emotional honesty is absent in most if not all families, there might be what could be described as a pseudo-honesty but not real acceptance of the 'full spectrum of feelings'. Who of us are allowed for instance to have and be angry with out folks even when that anger is legitimate? And the other point I'd like to make is that disabilities can take many forms e.g phobias, intense fears, depressions, alcoholism, addictions etc. We all of us, reagardless of the 'disability' have feelings that we doin't voice within our family of origin, as 'anonymous' says, "when parents argue children become frightened / insecure. The arguments can be about anything under the sun and not just about the child with the disability and what can be more 'disabling' than that. Having said all that there is without a shadow of a doubt that there are sibs, and indeed parents, who are left shouldering the burden of excessive caregiving.

I too would like to know how in fact "Research shows increased risk of psychological and social problems in some siblings who are burdened by excessive caregiving roles and who, in effect, become ‘little parents.’". The popular phrase” it takes a village to raise a child” best replicates both the ways in which my culture views the idea of caregiving and how I was raised. That “disabled” child is just as much a part of the family as everyone else. I believe by distinguishing the disabled child from their “typically developing sibling” goes through the process of “othering”. Whether it would be typically developing children who care for their “disable” sibling or the “typically developing” older sibling that cares for the younger sibling the result is the same. At some point in their life they have cared for their sibling. I believe are capable of expressing both their desire to care and their limits to caring for their “disabled” sibling. Parents also hold responsibility in actively listening to their children’s concern and how they feel. I am deeply disturbed by making such an overgeneralized statement suggesting that siblings should not care for their “disabled sibling”. Professor Wong stated that her intention in writing this piece was to “raise awareness that families of people with disabilities need more support, more access to respite care and to professional caregivers, and more visibility in society at large. Instead of raising awareness I feel you have further added to the list of what parents ought to be doing and how to do it. This article makes no note of many families who are unable to access respite care and respite services. You have used “research” to make an over generalized or provide your own account that now further ostracizes families in the disability community who’s sibling care for their “disabled” brother or sister. I urge everyone to remain cautious when such studies are produced. Disability, like race, ethnicity, and culture are socially constructed concepts. All of which were backed by research(science/studies) to determine how “mentally retarded someone may be, how someone’s race like being black represents inferiority etc. The ways in which individuals, families and cultures perceive and accommodate disabilities vary significantly. I would appreciate the next time overgeneralizations are made and hyper visibility is given to such families like those that suggest kids should not care for their disabled sibling we provide another account. The danger of a “single story” on such a popular site like Bloom is that it provides a “single narrative” which has the ability to have a dangerous impact on families with children who have a “disability. It would be great to see more studies that actually confronted barriers families face in accessing respite services.

I would never recommend that older sibs never baby-sit their younger sibs who have special needs. Most do, and many learn life lessons as they do so.

That said, this role can obviously be abused—and sometimes is when a young sib becomes a surrogate parent or is the parents' sole source of respite.

I think it is helpful to check in on the behaviors of sibs in families where no one has a disability. Do those kids baby-sit their younger sibs from time to time? Probably, and it is probably more beneficial to the babysitter than not. And If it isn't harmful for these kids, it is unlikely that it will be harmful for typical sibs to occasionally baby-sit their younger sibs who have disabilities. (This, of course, is assuming that the younger sibs are not medically fragile and in need of a skilled adult or have violent or similarly problematic behaviors...)

As long as an older sibling is being compensated for caregiving of younger ones, there is not a problem. However when an older sibling it told how lucky they are not to have a disability, and that the sibling with the disability needs more care because of the disability, then you are creating guilt in the non-disabled sibling. Each child deserves care and love from the parents, they don't need to become parents while they are still children.

I want to echo the Anonymous above who mentioned limited access to respite. In our state, there is no way for us to access publicly funded assistance without paying a "family co-pay" in excess of a thousand US dollars per month. We could take the siblings out of their private school and forego our already infrequent vacations, sports and other activity fees, etc. to stretch our budget enough to afford this co-pay, or the kids can pitch in and help the family. We are in it together. Not one of us would have asked for the challenges involved in caring for a severely disabled child, but it is what it is. For us, making sure no one gets overburdened or resentful means being alert to the very real possibility and taking turns.

I think it is unfair to refer to the piece as a 'single narrative'. I have a lot of contact with adult sibs and many talk about their 'lost' childhoods. I agree that some caregiving of a child with disability can be a positive influence on sibs but it can also be a burden if overdone. Many children do not have the capacity to speak up for themselves. Those parents who have responded here may be doing all the right things by their children who are sibs but please be open to the fact that many sibs are not supported to develop their own potential.

What about the belief that "It takes a village to raise a child"? That village can include immediate family members, extended members and community members, no matter if a child has a disability or not. Our society used to be much more compassionate, caring and supportive. Today's fast-paced stressful and competitive society has resulted in lost childhoods for far too many.

Thanks for all the clarification, Sophia. Frankly, I found the Pillow Story off-putting in tone, but the discussion following it was very informative. I agree with those who balk at the generalizations and really appreciated Louise's clarifications as well as Eric's. Obviously, there is much to think about here -- I, for one, am nearly always painfully aware of what effects their sister's disabilities might be having on my sons. It can only be good for this kind of information to "get out," although my hopes for increased respite care and relief for caregivers are pretty low.

I am a parent of two kids, one with severe disabilities and one with no diagnoses, so I was interested in reading this post. What struck me most is that it almost perfectly described how I became a "little parent" and took on more responsibilities for my siblings when I was a child, even though my three sibs were not diagnosed with anything. So I think family dynamics can be tricky, and it's really about the skill and values in the parenting, the personalities and temperments of the children in the family, and not necessarily a clear result of any diagnosed disabilities that may or may not exist. After all, we all do have our own abilities and disabilities that shape our lives.

Firstly-I feel it is a "single narrative" because it is providing only one account of how sibs feel and I would have appreciated a different account to be represented because then I feel it balances out the issue. For example, other topics like the idea of someones sexual orientation being nature vs. nurture or abortion pro life vs. choice etc. I believe whether or not you agree when you publish something that suggests sibs should not care for their disabled sib to those readers out there that have no experience or knowledge of this subject may take away from it only the "negative".

Secondly- Leaviing a child "alone" with a disabled sib can be problematic especially if the disabled child has a "cognitive disability" well that's broad that can mean anything from a child being diagnosed with Down Syndrome, Autism,ADHD.I find that problematic because what does having a cognitive disability have to do with care? Also when a child is defined as medically fragile that too is very broad it can mean they are on a ventilator or oxygen (which then I could see where concern would factor in) However it can also mean someone in a stable condition dependent on enteral feeding,limited mobility,dependent on life sustaining medications, treatments. Again I feel that takes it out of context because although someone might be dependent on life sustaining medication and are considered to be medically fragile that does not mean their care is also "fragile". Some people diagnosed with Cerebral Palsy are considered medically fragile too. But that tells you nothing about their care. As for sibs who give care can also become abusive I believe that adults to can become abusive,just like parents and teachers and partners in a relationship. While I'm not suggesting sibs can never be abusive I don't believe it is fair to single out the fact that it is a possibility because it is very possible and prevalent in retirement homes where elderly people are often abused by the people that care for them. I'm not suggesting all sibs should care for their disabled sib, I'm suggesting that it is something families have to have a responsible open discussion about. It's not for everyone but that's where parents are responsible to make a judgement call in when they feel its appropriate and when it's not. It also would be great to get the disabled sibs take on it(they too have feelings about this and who is involved in their care).

Thank you! As a parent of two daughters who have a great sisterly relationship, we've already seen our typically developing daughter wanting to help with her big sister's care. Definitely a good thing to remind ourselves that kids deserve to be kids and shouldn't be burdened by the challenges of caring for a medically complex sib.

Excellent point made -- "...good thing to remind ourselves that kids deserve to be kids." The poster is absolutely right. opThat being said, then why continue using language that labels and separates? Can't we just say 'our daughter' or 'our son', 'sister' or 'brother' rather than adopt qualifers such as 'typically developing', 'disabled sib', 'non-disabled sib', etc?

The other comment that I would like to offer relates to the use of the term respite which is often used. According to the Oxford Dictionary, respite means "a short period of rest or relief from something difficult or unpleasant". Isn't it horrifying to think that we are referring to something involving loved ones that is considered, by definition, to be 'difficult or unpleasant'? It's no wonder that the word burden is associated with raising a son or daughter with disabilities with siblings in the family.

Thanks for everyone's comments. This has been an eye-opening discussion.

Hmm....I am not sure it is reasonable to use the term 'typical siblings' when you are talking from just your perspective. Donald Meyer (The author of Views from our Shoes) has interviewed hundreds of siblings and 'taking care of my disabled sibling' does not typically make it to the top 5 concerns. I am not saying your concern is not valid in your family, but to abstract your findings out to 'Never ask a kid to care for their disabled sibling' for every other family, I find extraordinarily judgemental. If your child considers themselves ready to babysit a typical child or hold a part time job, then they are certainly capable of watching their disabled sibling (depending on the disability & their size). If they don’t want to, that is a different thing. I think it is totally reasonable to ask a typical child to help out around the house for 1 or 2 hours per week scheduled at their convenience. If my typical daughter did not want to look after her sister, she could just say so and I’d get the 14 year old neighbour to come over and do it. But she doesn’t mind – she prefers to watch her sister than to do other household tasks. Our agreement is if I want her for more that 1-2 hours, I need to ask & pay and she can freely decline.

Things are very different than they were 20 years ago. We all have cell phones and can be home in 10 minutes. I don’t ask her to care for her disabled sister because I am tired and need a break. I am asking her because I have an opportunity to enjoy a coffee or glass of wine with a neighbour, I want to run to the store or go for a quick walk and she is home with no plans. That is what families do – they organize themselves to maximize everyone’s enjoyment. She is not foregoing any social or school activity to watch her sister.

I think there is a huge jump between excessive caregiving and participating in the care of a disabled sibling. I think it is a huge loss for all siblings if we restrict their interactions on the fear that as a family, we are already destined to fail to communicate effectively our wants and needs. After all, the corollary is not true – not looking after their disabled sibling does not mean that a kid will be successful in identifying and pursing their dreams. Ultimately, we must be free to communicate our own issues – not those that belong to someone else.

I am an adult and I have an adult sibling who has a disability. I feel guilty for being healthy and having opportunities that my sibling may never have. My mother has been angry with me for years because I have never done enough for my sibling. Our small family revolves around my sister. My mother told me from my late teens and early 20's that I would be responsible for my sister (her illness came in her early teens). My mother wanted me to be my sister's best friend. But I couldn't. We were five years apart and our temperments were so different. I was always very independent. I was already out of the house when she got her illness. I lived independently in my teens and I took care of myself. I could never ask for anything or any help. My sister needed all of their time. I am now in my 40's. I feel guilt, pain and resentment that I fear will never go away. I fear my parents have made my sister more dependant. I haven't spoken barely to my mother in almost 10 years. I am afraid to go home. My mother hates me for what I don't do. When my parents helped my sibling to have a baby on her own with IVF I had to step out. My sister is not able to care for herself. My parents help her now. I went into a helping profession. I am afraid to go home. I had to set my boundaries because my mother would tell me scary news overtime I called i.e. she has a brain tumour, she will die, we will lose the house, she needs a wheelchair. None of these things happened. This is just common communication from my mom. I would like to say to parents out there to be careful how you treat and speak to your able bodied siblings. Please remember that they already feel intense guilt for being healthy. I have no problem with taking care of your sibling now and then. But please don't take your frustration out on us and make us solely responsible for our siblings care and happiness. The reality is that I will ultimately be responsible for my parents, sibling and her child. I wish that I did not have to carry this much fear, guilt and sadness for so many years. Will I be able to do it all on my own? Mothers please don't punish or try to scare your kids who are not disabled. We feel more than you know. Thank your to Sophia Isako Wong for bringing up this topic and discussion. I am so appreciative.

The BLOOM blog welcomes comments from readers on issues that affect parents of children with disabilities. We moderate comments to ensure they’re on-topic and respectful. We don’t post comments that attack people or organizations.